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Every autumn, staff working on the frontline of the NHS form an orderly queue, roll up their sleeves and have their annual flu jab. Such enthusiasm to be vaccinated reflects a general consensus that flu can be very nasty and, in some cases, fatal. In fact, who could disagree with the rationale – that if healthcare staff don’t get vaccinated, they could pass the virus on to their patients, some of whom will be particularly susceptible to developing complications. And of course, who will look after the patients if healthcare staff go down with the flu and are too sick to care for them?Continue reading →

For me the day began with a walk past eagles with their wings outstretched, catching some rays in the early morning sun. I was heading to a room in London Zoo. In a few hours 40 young carers and young adult carers would turn up ready for a day of discussion, questions and campaigning. The NHS was bringing together important decision-makers such as Simon Stevens (Chief Executive of NHS England), Neil Hunt (Chief Executive of the Royal College of GPs), Wendy Nicholson (Professional Officer School & Community Nursing at Department of Health) and Xane Panayiotou (Department for Education). These decision-makers are involved in areas such as school nurses, GPs and new legislation to give stronger rights to young carers. Others oversaw big chunks of the NHS, such as services for people with long-term conditions and improving patient experience. They were coming to the event to listen to young carers and young adult carers in order to act and improve the NHS for them. Continue reading →

Many of us will have had a hard earned rest over the summer, perhaps a trip to the seaside, a good book and some time for reflection.

Our local bloggers — hard-working Chief Executives of local carers’ organisations part of the Carers Trust Network — have been reflecting on the on-going changes in the NHS.

Find out how things are unfolding for this month’s blogger who says that whilst there are still lots of challenges, there are positive developments too…

The overall structure of the NHS is clear to me but the detail and practicalities are less clear. For example the actual working relationships between the CCG, Public Health, HealthWatch, Public Health England and the Commissioning Support Unit all feel really unclear. There was a lot of hype around the change but actually, we are talking to the same commissioners. In some ways it feels like nothing has changed.

What’s working well?

CCGs have done lots of work to get out there, especially the GPs and leadership team and are presenting themselves as a new and public facing organisation ready to truly consult the population on what they want. This feels exciting.

The main challenges

The organisations seem small in terms of number of people and this is having an impact on how we can communicate with them. Additionally, the big expectation was that GPs would be available to talk about all commissioning, service planning and design, but we are talking to the same commissioners, with basically the same plans.

In many ways it’s a story of continuity rather than radical change. But this could of course change over time.

It all feels really challenging on the ground, from changes in IT systems, to offices, to big expectations being shoe horned on to a complex system that already exists!

It also feels like we often hear “that’s something we’re working through”.

It has been surprising how slowly some of the organisations have been setting themselves up. They say that they have only had 3 months since 1st April 2013, but actually there was a long lead in but it seems that the funding, people or support wasn’t available to do the work required.

Variation and a lack of clarity

Health and Wellbeing Boards are very different in the two areas. One feels more progressive and open and we even have a place for carers on the board. However this is under the guise of two places for HealthWatch, and one for carers. It is mostly a very small group of statutory representatives sat around a pretty closed table. Having said that, the demands on the Health and Wellbeing Boards feel immense.

Silence from some parts of the structure

HealthWatch is not fully up and running and again, although the national policy sets out how HealthWatch is different to LINKS, locally, it is unclear how HealthWatch will fit with the patient and public involvement that already exists.

NHS England’s regional office has been silent and given that they hold the contracts with the GPs, it feels they are an important stakeholder who we are, as yet unable to engage with.

Finally, Public Health has been the most silent in our experience. But as ever we are hopeful that all the parts of the system will start to come together and the conversation about how best to support carers will take place.

What do you think? Tell us what’s been happening in your area over the summer…

The slides show the main changes to management, accountability and funding structures resulting from the Health and Social Care Act 2012.

In our latest blog, one of the network Chief Executives reflect on how the different parts of the new system – Clinical Commissioning Groups (CCGs), Health and Wellbeing Boards, Public Health and HealthWatch – are working together in her area.

She says that things are still confusing and that there are still lots of challenges to address as the reorganisation of the NHS continues.

I have studied the slides and whilst they are not difficult to understand, they are unnecessarily complicated and it’s interesting that the different bodies appear to work in isolation of each other. There doesn’t seem to be anything between each body, leaving plenty of opportunity for conflicting and duplicated work. Also I’m not sure whether the local structures are clear.

Some developments but more engagement needed

The Health and Wellbeing boards have identified some priorities, and they have met with some of the partnership boards (including voluntary organisations) to detail how they want to work. They have identified carers’ needs as one of their priorities – that said, they are not engaging with carers’ centres and at the moment details of membership, or approaching members of the boards to raise issues, is shrouded in secrecy. This is my experience — there may be others who think differently but I have yet to find them!

In my area there is a partnership board, which is a partnership of statutory and voluntary sector organisations, who meet every couple of months to discuss the headline issues and the Director of Public Health usually attends these.

The last two meetings have been cancelled for one reason or another, and it is at times unclear what the purpose of the meetings are as each participant appears to have their own agenda. This is particularly noticeable just now as contracts are changing and the council are opening up services for tender.

Are different parts of the structure working together?

Whether or not the Health and Wellbeing Boards are getting involved with new CCG arrangements is another unknown. This includes whether they are any good at filtering out what they are involved with and any anticipated outcomes.

There are plans for the CCG’s in my area to work with the local authority. However, how they work is not made clear to either stakeholders or wider partners in general.
There is almost an air of secrecy around who works with whom and to be honest I do not think this is entirely the fault of the CCGs. Our local authority have not been proactive in informing the communities that they serve how they plan to work with the CCG’s and what their joint priorities are, or indeed what conflicting priorities exist.

I’m guessing the Public Health are engaged, but again: what their input is, what any anticipated outcomes are, how they are working with the wider community and with the CCG’s in particular, has not been communicated.

It feels at times as though these bodies (I can’t really call them partners at the moment, because there is very little real partnership taking place) are shrouded in the Harry Potter cloak of invisibility. It is really confusing!

Yesterday saw another report taking a long hard look at the state of social care in England – this time the Nuffield Trust in Reforming social care: options for funding. The hard truth is this: we all know social care needs more money and none of us want to give it. Those of us involved in the care system already, one way or another, generally think it should be paid for by taxpayers. Like the NHS, we want it to be there when we need it – free at the point of use. That sounds great and I’ll continue to tell anyone who’ll listen that it’s what people want, but if I’m being honest with you, it just isn’t going to happen.

There is no appetite within government for putting taxes up – even under Labour in the good times in England, free care was never really up for discussion ( unlike our Scottish friends). With a Conservative-led administration, and in these austere times, we just have to face facts that it’s not on the table.

So what are the other options? The Nuffield Trust have come up with a few. As you might know Andrew Dilnot suggested a cap of £35k on the amount an individual might have to pay for their care once they reach “substantial” level of need (this would be lower for people who have care needs earlier on in life. Well maybe we could increase this, but would this reduce the effectiveness of the whole proposal? We want people to think it’s a manageable amount to plan for so they don’t leave care in their older years completely up to chance.

Other options suggested are redirecting the NHS underspend to care . I’m all for that, but I find it hard to believe the NHS has all that spare cash sloshing around. We found it hard enough to get them to tell us about the £100m they were supposed to be spending on support for carers last year. And you know what happens when you discover you might have to give cash back if it’s not spent – you suddenly find a hundred useful things to do with it, so that suddenly – surprise! – the cash is gone.

The other area they suggest is the one which might be most controversial. They suggest that a lot of benefit payments go to older people who are quite wealthy and don’t really need them, so we could claw some of this back and use it to pay for care for others. I can hear the sharp intake of breath happening in older peoples’ circles all round the country. Whilst in principle I think we all understand that benefits are there to ensure a reasonable standard of living for everyone, and that £100 might be a whole income for one person for a week but might be pin money for someone else, I still think this would cause massive political ructions. I don’t think any politician, particularly the Tories with the demography of their voting base, will be queuing up for the outpouring of grey rage that would ensue.

The trouble is that whatever sector of the population is hit, someone will object. Of course they will. If it’s carers who are hit I will be first in line to shout the odds to defend carers’ incomes. But if we all just focus on defending our own patches, nothing will change.

So what’s the solution? If the spare cash in the NHS really exists then, sure, let’s get out hands on it but even if we do it won’t be enough. I think we all need to ask ourselves some hard questions and decide what price we’re prepared to pay for a fairer system. So tell me – who do you think should give?

Being there for someone in the last few days of their life is just about the toughest thing you can do. At the same time as you are focused completely on them, you are struggling with your own terrible feelings of distress and grief. And then, when it’s finally over, you discover it’s not over at all. As a carer or family member you have to find a way to carry on when your world has been blown apart. I know because I’ve been there when my mum died 13 years ago.

There is so much that the NHS and others can do to make this, which will always be a terrible time, as least awful as possible but too often families and carers are left to struggle. If you can call me lucky, (and to be fair I don’t feel all that lucky), the doctors and nurses that supported me and my family were fantastic and made something so awful much more bearable.

Last year, an independent review of palliative care was carried out, looking at the way people with life-limiting or life threatening conditions, and their families and carers are supported. Our system is a mish-mash. Some services are funded by the NHS, some by charities, and some paid for by individuals and families themselves. Many people don’t get the service that would be best for them if they had the opportunity to choose from all the options.

If a local hospice is the place that you and your family feel is right, that’s where you should be able to spend that precious time. If you think hospital or a care home is the best place, again that’s what should happen. If being at home is right for you and your family, then that should be made to work with the right kind of help. There is a push to ensure more people die at home than in hospital – generally what people want – but often not enough support for families. Without the right kind of support, carers and families often can’t cope. The person ends up being readmitted to hospital as an emergency, and sometimes never comes home again. Not what anyone wanted.

If you and your family do decide being at home is the right place, then effective support needs to be available 24-7. How many times are we told help will be on hand only to discover that the office is only staffed 9 to 5? If it’s 2am, how are you supposed to manage until the morning? Crises don’t just happen in office hours.

Yesterday, the Government and Marie Cure Cancer Care announced funding for pilot sites to explore what better support for people at the end of life would look like and how this can be made to work. Although it’s easier not to think about it, this is one thing we’re all going to have to confront eventually. We need to make sure that when we’re facing this one great final leveller, there is the equity of support to make it no worse than it has to be – for the person themselves, of course, but also for their families and carers.

Not long ago I did a conference presentation on the Health and Social Care Bill. To make an after-lunch slot a little less soporific I dusted off my White Rabbit and gave the whole session an Alice and Wonderland theme. Curiouser and curiouser, I said, and 3 months on, we’re still stuck. Not going forwards, no going back. Round and round, consultation after consultation, debate after debate, and still no sign of the tea party being over. Another cream bun anyone?

Whatever your take on the Health and Social Care Bill, I think the one thing we can all be sure of is that the hiatus that’s occurred within NHS structures isn’t helping anyone. Don’t get me wrong, we shouldn’t plough ahead with proposals which are likely to make things worse rather than better. Personally I think tweaking the old system with better clinical involvement would have done the job. It wasn’t perfect but it did work. Instead, what has happened is that in advance of decisions being made, the system has effectively been dismantled and elements of the new one put in place, with no legislative mandate to do so. Maybe I’m old fashioned but I kinda think you should wait till Parliament has made the decision before you implement it.

I’ve got no problem with involving GPs more in commissioning. Some of my friends are GPs even. But they don’t always have carers right at the top of their agenda. That’s why the Government has worked with us, the Royal College of GPs and Carers UK on a programme to ensure GPs are more carer aware.* Across the country, Carers Centres and Crossroads schemes work extensively with GPs in their areas, constantly reinforcing the message about supporting carers. All GPs need to do is think carer – identify and refer. But often the carer is sitting there, right in front of them, struggling, and still it doesn’t occur to them that they could be the lifeline to support.

The other worry I have is that in the shift from the old NHS structures to the new ones, and the inevitable change in commissioners and staff, all the progress we’ve made on making sure support for carers is prioritised might be lost. The Government has listened to us on this issue, and so have many Primary Care Trust and local authority commissioners, but it’s still not enough and we don’t need any backsliding.

Who knows what’s going to happen now, with more and more health professions rattling their stethoscopes , it could be a while before we know the final shape of the new NHS. It could get curiouser yet. However, for carers and those they care for, life goes on regardless, whatever the commissioning structures turn out to be. If we need to start the debate on why we need to support carers all over again, we will. We just shouldn’t have to.

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PS: If you read my blog 2 weeks ago, you’ll see that a carer asked that I mention the Carers Ambassador programme in England where carers can get involved in their local area raising awareness of carers issues. If you’d like to find out more about this, contact the project manager Michael on michael.shann@carersuk.org

The Government has made an immediate response to our ‘NHS Not Making the Break for Carers’ report by prioritising carers in the NHS Operating Framework for 2012/13. The Operating Framework is the set of requests given to the NHS by the Department of Health every year, guiding their priorities.

Following our report, the Government has said that carers is one of only three areas that have been designated as requiring “particular attention”. Think of all the illnesses, diseases, long-term conditions and medical issues the NHS is concerned with, and then consider what it means that carers are up there as the most important priority.

Of course, the reason that the NHS needs to pay “particular attention” is because they have not been doing enough to support carers, despite additional money and Government requests to do so. This Operating Framework is a sign that Health Ministers Paul Burstow and Andrew Lansley are losing their patience having been quite clear what they expected from the NHS in terms of supporting carers.

What they didn’t expect was that most Primary Care Trusts (PCTs – local NHS bodies) would not publish plans and budgets to support carers despite being asked to; and that some would continue not to invest a single pound in services to support carers, despite receiving additional money for this.

So for 2012/13, PCTs need to agree plans and budgets with local authorities and local carers’ charities. These plans should identify how much of the total is being spent on breaks and indicate the number of breaks that should be available from that funding. Importantly, PCTs have to publish these details on their websites by 30th September 2012 at the latest.

But we can’t wait until then to act. Carers and carers’ charities need to be contacting their local PCT now to find out how they will be improving on what they were doing this year. PCTs by ranking in terms of spending on services for carers and ask the non-Executive Directors of your PCT what they will do to improve that.

The NHS has a duty to those people who have often sacrificed so much to care for people, and they also have a duty of care to their patients who are otherwise being cared for by their friends and family. Our message should echo that of the Government’s; the NHS can no longer avoid their duty to carers.

The NHS in England is receiving an additional £400m over four years, 2011-15, to increase support for carers but our report, published today, has found that the NHS has not increased the level of spending on services for carers from last year. Indeed, there might be a small decrease.

There has been progress in some areas where local primary care trusts (PCTs) are investing significant amounts, such as £2m, in services for carers in 2011/12. In these areas more carers will access breaks, receive training to help them manage their caring role, and specialist support for carers caring for somebody at the end of their life.

But there are still PCTs (4%) that are investing nothing in services for carers, with another 8% investing less than £100,000 this year. We need these PCTs to look at the fantastic work being done in places like Torbay, Bristol, Surrey and in the South of Tyne and Wear and see the benefits to carers, patients and the NHS itself that investing in carers can produce. Torbay has found that supporting carers has enabled smoother discharges of patients from hospitals, a key aim for the NHS and Dr Thomas, a GP and Chair of Torbay Professional Executive Committee believes carers are a top priority:

“Introducing Carers Support Workers in our practices has produced many benefits. It has facilitated early identification of people who are carers offering them practical and emotional support. As the population ages and more people live with long term disability the support for carers will remain a priority.”

The challenge for Government must be to ensure that with more new money being given to the NHS in 2012/13, the NHS uses it to support carers. I seem to have said this every year for three years but I do think Government will act to push this.

The Health Minister, Paul Burstow, is taking this report seriously and we met with him on Tuesday to discuss our findings. He will act to increase the expectations on PCTs, and on this he has the backing of the Prime Minister who had requested an investigation into how PCTs were spending the additional money.

PCTs are facing a particularly difficult year in 2011/12, including tightening budgets, but the Government has been clear about PCTs’ responsibilities regarding carers. But some PCTs are failing in their duty to carry out what has requested of them. For instance, only 13% of PCTs have published budgets for supporting carers when all were meant to by 2 September.

However, PCTs do not only have a duty to Government, they also have a duty to support those who sacrifice so much to care for others and a duty of care to their patients who are often relying on support from these carers. Too many are failing in this.

Whereas Labour are still deciding their priorities, the Conservatives appear to have nailed theirs to the mast. And social care isn’t there.

Eric Pickles MP, Secretary of State for Communities and Local Government began their conference by announcing that

Eric Pickles MP with David Cameron

£250m had been found which would be given to councils for weekly bin collections. Funding for social care comes from councils, and funding for local authorities comes from the Department of Communities and Local Government. So rather than giving this money to councils to spend on social care, the Government are saying it has to be spent on bin collections.

This Government, and Pickles in particular, has been adamant that decisions must be made at the local level, and councils given freedom to decide. Yet, Pickles is not making this £250m available for whatever councils think it could best be spent on; it is only available for councils who want to move to weekly bin collections.

Of course, some councils already run weekly bin collections, and a couple of councillors at the Conservative conference were left wondering whether they should stop that so that they can claim some of the £250m to reintroduce what they are already doing.

This was followed by George Osborne’s announcement that Government had found an extra £800m to give to councils who committed to freeze their council tax rates. Again, this newly found money is not available for councils to spend as they see best but can only be used to compensate councils who do not increase council tax rates.

Compare this focus on bins and council tax to social care. I asked Lord Freud (DWP Minister) and Greg Hands MP (Parliamentary assistant to George Osborne) about how important it was to implement the Dilnot Commission’s recommendations on social care but received no answers. I asked Maria Miller MP (Minister for Disabled People), who said meeting the challenge of our population’s changing demographics was one of our biggest, but instead of discussing Dilnot’s report, focussed on how introducing the right to request flexible working for all will help carers trying to juggle work and care.

Andrew Lansley in his speech did mention the £400m given to the NHS to support carers, but there was no mention of social care or Dilnot. When asked about it, no firm commitments were forthcoming. Understandably, Lansley is focussed on getting his Health Bill through Parliament but we must get the Conservatives to see social care as a priority.

Instead of commitment to reforming social care, there is a reticence emanating from Conservatives. It usually starts with talk of implementing Dilnot being very expensive and a lot of work still to be done. Implementing Dilnot is £1.7bn per annum; the Tories have just found, out of nowhere, £1.05bn for bins and council tax.